2 DisclosuresI will not be discussing any experimental or off- label uses for any therapies during this presentation.I have no relevant financial relationships to disclose.

3 ObjectivesDescribe features by which parents in the NICU with post-traumatic stress may be recognized.Describe effective and supportive communication strategies when encountering NICU families in crisis.Identify three resources available to NICU families suffering from emotional trauma.

4 FormatReview what’s known about NICU parents and post- traumatic stressDiscuss future areas of potential research in this areaReview supportive communication strategiesDiscuss resources available to NICU parents and former NICU parents (especially local resources)Open discussion of personal experiences (poignant examples, successes, community needs, etc.)All slides are available on our website (

5 One last disclaimer…I am by no means an expert on mental health or psychological trauma.I am a neonatologist who bears witness to the stress the NICU environment exerts on babies, their parents, and families.

10 Trauma“Experience of a threatening situation that goes beyond the bounds of the individual coping strategies and is accompanied by a sense of helplessness and defenseless abandonment.” (Yehuda, 2002).

11 Post-traumatic Stress Disorder (PTSD) (DSM-IV-TR)A: Exposure to a traumatic event(a) loss of "physical integrity", or risk of serious injury or death, to self or others, and(b) an intense negative emotional response.B: Persistent re-experiencingOne or more of these must be present in the victim:Flashback memories, recurring distressing dreams, subjective re-experiencing of the traumatic event(s), or intense negative psychological or physiological response to any objective or subjective reminder of the traumatic event(s).C: Persistent avoidance and emotional numbingThis involves a sufficient level of:avoidance of stimuli associated with the trauma (thoughts, feelings, or talking about the event(s);avoidance of behaviors, places, or people that could lead to distressing memories;inability to recall major parts of the trauma(s), or decreased involvement in significant life activities;decreased capacity to feel certain feelings;an expectation that one's future will be somehow constrained in ways not normal to other people.D: Persistent symptoms of increased arousal not present beforeThese are all physiological response issues, such as difficulty falling or staying asleep, or problems with anger, concentration, or hypervigilence.E: Duration of symptoms for more than 1 monthIf all other criteria are present, but 30 days have not elapsed, the individual is diagnosed with Acute Stress Disorder.F. Significant impairmentThe symptoms reported must lead to "clinically significant distress or impairment" of major domains of life activity, such as social relations, occupational activities, or other "important areas of functioning”

12 Fundamental question #1Are all criteria necessary for the traumatic event(s) to be important to a parent’s ability to cope and function?

14 Impact of NICU experience on parentsSense of loss of personal control over eventsEspecially related to infant survivalLoss of role as decision maker and care giverWhen is this regained?discharge or beyond?Appearance of fragile or sickly infantElevated distress leading toDepression and anxietyASD and PTSDEmotional distress correlated withInfant maturity and Complications (DeMeier, RL et al. (1996))

19 Pierrhumbert et al. (2003) Objective: Methods: Findings:Examine effects of PTSD reactions of parents on sleeping and eating problems of former preterm infants.Methods:Perinatal PTSD questionnaire (PPQ, by Quinnell and Hynan, 1999) administered to 50 families (mothers and fathers) of former preterm infants and 25 families of full term infants at enrollment and at 6 mos. CGAFindings:67% of mothers of preemies vs. 6% controls exhibited clinical post-traumatic reactions at 6 mos past expected due dateIntensity of those reactions correlated with eating/sleeping problems of infants

20 Holditch-Davis et al. (2003)Objective:Investigate post-traumatic stress responses of mothers with premature infantsMethods:Mixed qualitative-quantitative design w/ semi-structured interview screening for PTS features at enrollment and at 6 months corrected age30 mothers of high-risk preterm infantsFindings:All mothers had at least one PTS symptom12 had two symptoms16 had three symptomsInfant illness severity was significantly associated with PTS symptoms

22 Jotzo and Poets (2005) Objective: Methods: Findings:Investigate effectiveness of a trauma-preventative psychological intervention for parents of premature infants during hospitalizationMethods:Sequential control-group designSingle session crisis intervention w/ psychologist w/ additional support throughout hospitalization when needed25 mothers in intervention group/25 in control groupAssessment at discharge w/ IESFindings:19 mothers in control group showed symptoms of clinical trauma post-birth compared to 9 in the intervention group

23 Systematic reviewResearch on the perspectives of NICU parents is limitedStudies had methodological limitationsSmall size, high attrition ratesLittle diversityTime of assessmentMothers vs. fathersLack of control for illness severityNo clinician-administered assessment tool for PTSDIntervention studies are particularly lackingLimited information on effective strategies of support

26 Shaw et al. (2009) Objective: Methods:Examine the prevalence of PTSD in parents 4 months after the birth of preterm or sick infantsExamine the relationship between PTSD and ASD symptoms immediately following birthMethods:18 parents completed completed a self-report assessment of ASD at baselineSelf-report assessment for PTSD and depression completed at 4 months.

27 Shaw et al. (2009)Findings:33% of fathers and 9% of mothers met criteria for PTSDASD symptoms highly correlated with development of PTSD and depressionFathers showed a more delayed onset in PTSD symptoms, but were at greater risk by 4 months than mothers

29 Fundamental question #3Given a lack of evidence, what strategies of support/intervention should be offered in the NICU and after discharge?

30 Step one: Recognize the feelingsTerrorGriefImpotenceDepressionJealousyAnger“Even the most well-adapted appearing couple with an infant in the NICU is undergoing the most stressful crisis of their lives”Rachel, Social Worker

31 Step two: ValidateReassure parents that their emotions are a NORMAL response to severe stressMothers and fathers are more alike than differentBe wary of stereotypingUse communication that focuses on the individual parent’s experience and emotionsEmpathyEncourage verbalization

32 A unique parent perspective“You are going to be disorganized and upset for months—some of us for years. We feel crazy, and we want to return to normal quickly. But that is the worst thing that we can try to do, because we can’t stop or reverse the natural, healing process of our emotional reactions without doing damage to ourselves. The only things that are normal for high- risk parents are terror, grief, impotence, and anger… And experiencing these lousy emotions are signs that we parents are doing well, not poorly.”

33 A unique perspective“… the medical staff can do wonderful things to help angry parents, even though I know that angry parents are one of the most troublesome things for you. It is natural for you to want to avoid angry parents, but please stay with us. When we erupt and explode, don’t go away, even though you have pressing obligations. Stay there, nod your heads, and let our anger blow past you like the desert winds. Then, in the next day or two, when you sense that we might be more rational, come back to us and re-establish communications. Go over what we were mad about, and show us that you believe that our feelings are important to you. This is crucial. Many times, trust is the only good feeling a parent has. If that trust ever disappears, then that is the worst crash on the roller coaster for parents.”Michael Hynan, Ph.D. and parent of ex-preemie

37 ConclusionNICU hospitalization generate a traumatic experiences for most, if not all, parentsMany will exert signs of acute and post-traumatic stressManifestations and likely effects vary among individualsFuture research needed to better understand the nature of ASD and PTSD in NICU parents